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バルセロナキアリ奇形＆脊髄空洞症＆脊柱側弯症研究所

Departamento de gestión y comunicación

イタリアのAI.SAC.SI.SCOへの感謝の手紙(オリスターノ患者集会)

Publicado por ICSEB el 18 11月, 2011

Dear friend, I write to you… Dear Dr. Miguel Royo Salvador: I would like to allow myself to call you simply Miguel. I am writing this short letter to you to express my gratitude and recognition, being one of the few lucky people in the world who have been able to meet you. I would like to speak not so much of your genius talent in the field of neuro-craneo-vertebral neurosurgery (it is not necessary, I would not even know how the use the adequate medical terms since I myself work in a completely different area to yours), but of your human gifts and qualities. I was (luckily) able to participate in an event in Trieste organized by the “Associazione Italiana Sindrome Arnold Chiari, Siringomielia, Scoliosi Filum Tomizzati” on Satuday 12/11/11 in the “Circolo Sottufficiali”, because me and my daughter were accompanying my wife, Misses Rita from Rovigo, who you had performed the Sectioning of the Filum Terminale surgery on in May this year. As you will remember, my wife suffers from a severe kind of adult scoliosis, and was suffering, a few years a ago, from a constant strong pain in the right arm and of a serious respiratory insufficiency with a lack of oxygenation of the blood. Now well, dear Miguel, after your surgery, the strong pain in the arm has almost disappeared, whilst the respiratory problem has improved notably, and, after a postoperative with many ups and downs, the values of the oxygenation of the blood (arterial blood gas) have currently returned to almost complete normality. But as I said, in this letter I would like to underline, apart from your huge talent as a global neurologist and neurosurgeon, your human gifts and qualities, those of a normal person within reach of others. After the meal organised at the end of the event, I had said good bye to my friends and acquaintances I headed to the bar of the “Circolo” to have a coffee, when you arrived, and drinking the coffee together, as old friends do, we kept on talking a little about my wife Rita´s case. To a certain question of mine you answered that my wife had also been lucky. Well, dear friend Miguel, you were mistaken: luck is like the faith in God; you have to look for it. We did look for it (through the information organs, the Internet, etc.) and we found you. Thank you, dear friend Miguel. I would like to consider this testimonial as a small tribute to your work and that of your extraordinary medical and collaborators team, and hope that all the Arnold Chiari and Syringomyelia patients that don´t know you yet will read this through the media, and especially those neurosurgeons from the “Civile” hospital in Rovigo that we asked for help before contacting with you, who a priori ruled out that the pain in the arm that my wife Rita was suffering from could have been caused by the Syringomyelia, and those specialist physicians in pneumology and pain management who spoke amazed of a miracle when considering the obtained results. I finish, dear friend Miguel, thanking you once more, you and your team of doctors and collaborators, and I hope that we will have another coffee together in May 2012, when I will accompany my wife to Barcelona, to the Institute for her post-operative control visit one year in. Rovigo 14/11/2011 Gianni Lanzoni

フランスのA.M.I.S des M.O.Mへの感謝の手紙(リヨン会議)

Publicado por ICSEB el 20 10月, 2010

To all the members of the A.M.I.S des M.O.M association:

On behalf of the Institut Chiari & Siringomielia & Scoliosis de Barcelona team, we would like to thank you for the fantastic support, material as well as personal and emotional, for the organization of the 3rd Meeting “Chiari & Scoliosis & Siringomielia Foundation” for patients in Lyon.

We hope that your dedication and altruism for others will be appreciated in the way we do and we would like that your marvelous humanitarian task shall continue with the help of everyone.

All the members of A.M.I.S des M.O.M and its board please receive an affectionate hug from every single one of us who were able to share this great day of science, communication and emotion.

Dr. M. Royo Salvador, Mrs. Mara Espino, Ms. Gioia Luè, Ms. Pei Chen and Ms. Samantha Meir.

アーノルド・キアリ奇形I型、脊髄空洞症、脊柱側弯症患者さん宛に書かれたイタリアの Crocè医師のお手紙

Publicado por ICSEB el 29 12月, 2009

(We are here reproducing an open letter from Dr. Francesco Crocè, a patient and physician who underwent the Sectioning of the Filum Terminale procedure. You can also see his testimony on this website – section “Testimonials”)

Three years after the surgery of the Sectioning of the Filum Terminale carried out by the Institut Neurologic de Barcelona, directed by Dr. Royo Salvador, and reason for the creation of a foundation, AI.SAC.SI.SCO, which takes care of the “filumtized”, I have the moral obligation to inform all the affiliated, and moreover, all the patients affected by Arnold Chiari I, Syringomyelia and Scoliosis, of the clinical and radiological results of my personal experience as a patient/physician; hoping that this letter will help those who have confusing ideas about his matter.

Three years after the surgery, I can confirm with clinical and radiological certainty that the Sectioning of the Filum Terminale has worked to make disappear symptoms like: left interscapular pain, reduction of force in the upper right extremity, paresthesias in the lower extremities, nystagmus, nocturnal apneas and mental confusion.

The only symptom still present is a pain in my calves. None of the neurosurgeons consulted, including Dr. Royo, have been able to give me an adequate scientific explanation for this.

Regarding the radiological evidence, there has been a relocation of the cerebellar tonsils, the medullary cone and a reduction of the extent of the cervical syringomyelic cavity.

Despite such clinical and radiological evidence, I still encounter skepticism from fellow neurosurgeons, except for a few open minded, and this unfortunately explains the difficulties of the people who call me to ask for clarifications regarding these pathologies.

In fact, I would like to tell all patients that the Sectioning of the Filum Terminale by neurosurgical technique is done exclusively by Dr. Royo in Barcelona, and that in my experience, and not only mine, this procedure is completely free of risks.

I invite you to not trust those who maintain that they do the same surgery.

I also invite you emphatically to not allow that your skull gets opened – it is not useful and in the majority of the cases the pre-existing clinical situation even worsens.

Now then, I wonder, how it is possible to have doubts whether to have ones skull opened (with the implied risks: death, paralysis, etc.) and to have a simple cut at the coccyx level; unfortunately the explanation lies in what I mentioned before, my colleagues are still skeptical also in the view of clinical and radiological evidence and this is unfortunately transmitted to the patients.

Then there is the financial part, which might be the most unpleasant obstacle.

I hope that the creation of this association will be able to help people to solve this problem.

Please excuse me, but I have willingly had to be synthetic and avoided technical/scientific terms so that everyone can understand me.

I HOPE THAT THIS LETTER HELPS ALL THOSE WHO HAVE CONFUSING IDEAS.

I OWED THAT MUCH.

DR. FRANCESCO CROCÈ

イタリアのAI.SAC.SI.SCOへのお手紙

Publicado por ICSEB el 22 12月, 2009

Associazione Síndrome Arnold Chiari I – Siringomielia – Scoliosi – Filum Tomizzati 

December 22, 2009

Dear Sirs: I am writing to you upon learning about the constitution of the “Associazione Síndrome Arnold Chiari I -Siringomielia – Scoliosi – Filum Tomizzati” (AI.SAC.SI.SCO.) that for its name alone I feel very touched, as it expresses very clearly, emphatically and conclusively, the result of 35 years of my investigation. As a result of which, we now attribute the traction of the filum terminale as the cause of the three diseases; Arnold Chiari I, Syringomyelia and Idiopathic Scoliosis. And also, that the way to eliminate this cause is by the surgical section of the filum terminale, and thanks to the minimally invasive techniques, it can be performed with a minimum risk and almost as ambulatory surgery. I know the people who have constituted the AI.SAC.SI.SCO. Association, and I want to publically acknowledge their benevolence, dedication and altruism; always being at the disposition and in the interest of the other patients. As a person and as a doctor I am very satisfied that a group of my patients have made the firm and clear decision to support and help our Chiari & Scoliosis & Syringomyelia Foundation (CSSf) and with that, many other patients. The AI.SAC.SI.SCO. is the first non-professional health association that supports the work of our team publically, which makes us all feel an emotion and affection that we have not felt until now.

Now, at last, we know that a part of the association represented by the AI.SAC.SI.SCO. is entitled to us and justifies, with its existence and that of our patients, all the effort made until now. For this reason, I convey to them with all my affection, that we will continue investigating and working for them. On my behalf and that of my team, we would like to thank you. Dr. Miguel B. Royo Salvador